July 19 - Infusion #12

July 19 - Infusion #12

We got checked in and headed out back. Levi was walking all by himself. We went over to the desk and saw that Nurse K wasn't there and instead a different nurse, Nurse S was there. This could be an interesting day!

Nurse A was all ready for us to do vitals. Levi did a pretty good job. He gets bored standing on the scale for so long. I really don't understand why they don't have a digital one yet. The slide and wait for it to balance one can take FOREVER!! Height, oxygen, and blood pressure went great! But then it was time to do temperature and well that was going to be our nightmare for the day. Levi wanted nothing to do with that thing in his arm pit!

We got settled into the jungle room and Jay headed back to David's house to fetch Crayon. Levi and I headed to the play room to play. There was another family in the play room with several people talking to the mom about feeding and home life. It's always a little uncomfortable to walk into that. I know its a public place, but I also know some of those conversations aren't easy to have with anyone around. Levi played for a few minutes and then it was time to head back to his room for access and Benadryl.  I made the mistake of not grabbing planes before we got into his room and Jay wasn't back yet. Hopefully he will be back quick!

Nurse S was our assigned nurse for the day. I was able to talk to her some about things and it seems like she was a pediatric nurse for 15 years but moved to adults about 8 years ago. She comes over and covers shifts when people are out on vacation. She seemed nice, though maybe a little out of practice with kids. Levi is aware that being accessed isn't going to hurt but at the same time he gets angry/nervous. He sometimes kicks/pushes his legs out straight, and she was not happy about that. Nurse K and Nurse T just kinda blow it off but Nurse S definitely looked at Levi rather sternly and said "Don't kick me!" I think this scared him because he was pretty unhappy after that. She continued to seem nervous/frazzled, breaking a glove, dropping a tube, just all around a little out of it. The access was finally complete, the blood work was off to the lab, and the Benadryl was started.

Levi was screaming for planes. Oh goodness why didn't I grab planes before being stuck underneath him. Jay came back several minutes later thank god! I jetted off to the teen room to grab the movie and we had planes on the screen before a total melt down could happen!

Dr. V is on vacation this week! So Dr. K came to check on us. She looked at Levi, checked him out a little, and asked us a few questions. For the first time in Levi's life he said "ahh" and opened his mouth up wide for a doctor. Normally he clenches his jaw down tight. We mentioned this to her in a joking way but it actually started a pretty serious discussion. Apparently Levi needs to be pre-medicated with antibiotics in order to go to the dentist. The scraping of his teeth can cause him to swallow bacteria which can then stick to his port causing it to fail! Wow!! Good to know!! His next appointment is in a few months so we will call them and ask for a prescription then as they will give him liquid which is only good for 14 days (so not something we can hold on to for long).

The Benadryl was kicking in and Levi was getting very lethargic, though was watching planes. They came in with his plasma and got it started. Awesome! Levi's counts came back today at 159. Thats a 66 point drop since Thursday, not great, but not awful, especially taking into account the 30-40 point swing between the two labs. Today is flying by. The next thing I knew, Levi was sound asleep!

Wow! Today is going to go even better then expected. Jay and I had a few minutes to talk to Nurse T after the infusion started. We discussed the lab results with her yet again and the fact that we can't get information out of K to save our lives! Should looked in the file in the computer and it turns out that not only is K slow at getting us information she isn't even entering it into the computer in a timely manner. The last lab results in the computer were over a week old!! And she is entering them under the date that she enters them not the date that the lab was taken, making it look to the doctor like his numbers are very different then they are! This is totally not acceptable!! Nurse T was completely on the same page as us and said that she would send an e-mail to Dr. V and that we would discuss it again in three weeks.

Levi's 15 minute alarm went off and he slept right through it. Awesome. He didn't move when Nurse A came in to do his blood pressure, awesome! But then she needed a temp, and that gosh darn temp was going to be the death of us. He woke up! And that was the end of his nap! Oh NO!! This day that should have been easy is going to be VERY long. Because now he is awake at the very beginning of his infusion, but he is angry because he is still tired but refusing to go back to sleep. A 15 minutes nap is not long enough!!

We watched planes, ate lunch, had a snack, talked, watched cars, and attempted to keep Levi occupied. At one point Levi said he had to go pee and we took him to the bathroom. He was doing really well attempting to hold on to his pole. But he was just so tired that he was stumbling on everything. Jay had the brilliant idea to let him ride on it. Duh, why haven't we done this before. Levi had a blast!

He is doing so well with his infusions (medically) and he has gotten bigger so we are able to up the speed of them, of course we are also upping the quantity slightly as he gets bigger, but they are still faster. Now we do 75mL/hr for the first 15 minutes, 100mL/hr for an hour, and then 125mL/hr to finish. That definitely helps our cause.

The infusion was finally done!! Nurse S came in to deaccess his port. She brought some spray that was supposed to help take the sticky off of the stickers that hold the needle in. I think it made more of a mess then anything, but she thought it helped, and Levi didn't seem to complain as much, though he was giggling and squirming from the spray being cold. After the needle was out Levi was off and running to the play room. We told him he could play for a few minutes before we left.

He thought the spray was hilarious!!

Then it was time to leave. Another infusion behind us, the next one will be in three weeks!!

We were headed out and Levi stopped at the welcome desk on the floor that you come in on. We were a little confused why. The guy behind the desk was very nice and talking to him. Then Levi looked at him and said "Check in Please"! We all got a good chuckle out of that! We headed to the parking garage. Jay said "take my hand we are going in a parking lot" and Levi did and then said "Take my hand crayon we are going in a parking lot" and held on to crayons hand and we headed to the car!

David's House - July 18-19

David's House - July 18-19

As we are driving to David's house our vacation is officially over and we are headed back to the "real world". We went to the Maritime Aquarium today and had a blast! We left in the afternoon to start the 4 hour drive from Connecticut to David's House. We quickly hit traffic and weather making the drive even longer. Mr. Levi fell asleep during the imax movie and a few minutes in his stroller so wasn't having anything to do with a nap. He watched a movie, played with stickers, and colored in the car. It was a long drive!

We got to David's House around 8pm and got checked into the Dino room! :) Our most common room. This would be the first time that Levi was sleeping in a cot and not a pack and play. The plan was to pull the mattress off of the cot and put it on the floor for Levi to sleep on, but that plan was not to be, Levi did not want his bed moved. As soon as he saw his bed all set up he was jumping up and down. They had put Elmo sheets on the bed and a star comforter and he was ecstatic! He came running down the hall to tell me all about his "twinkle twinkle little star bed" and how it was all his!

I think they like him at David's House :) 

Levi wanted to go out and play and so Jay and Levi headed to the playground. I stayed in the room to answer a few important e-mails and take a few minute breather after driving over 5 hours. It wasn't long before I headed out to play too! There was another little boy on the playground that Levi played with some. :)

Before we knew it it was time for bed. We headed up the stairs for PJ's, brushing teeth, and climbing into bed. Levi wanted a drink so I headed downstairs to rinse his cup and get him some water (the only drink allowed in the bedrooms). Levi took a few minutes to go down, but not bad. He did ask daddy to "soft him" and then me to get daddy "Daddy needs to soft me!" which means he wants someone to sit beside him and rub his belly. It was very cute!! He fell asleep clutching his cup! With ALL his fella's looking on!

Jay and I did our normal sit in the hallway until he fell asleep. It didn't take too long, so that was nice. If you have ever wondered how incredibly exciting it is to sit in the hallway, here is what our view looks like:

Then we headed downstairs to relax for a few. I went up to bed around 10 and Jay came up around 11 or so.

Levi slept fairly well, but did fall out of bed once in the middle of the night. He cried a little, but I think it startled him more then hurt. He was back asleep in just a minute!

The next morning Levi was up bright and early! Our appointment was technically not until 9:30 (although they have no problem if we come over early). So I gave Levi paw patrol and laid back down for a few.

Watching Paw Patrol in bed.

Before long it was time for breakfast! I got dressed and Levi and I headed downstairs. It was quiet! Levi had some cereal and some fruit, but didn't eat great. I believe he is starting to put it together, that after we eat breakfast we go to the hospital. I don't like that, but I don't know what to say to him, it's the truth. He doesn't usually see it as a bad thing, just an unknown thing. He gets overly hyper and not listening. Pretty much just a cranky crazy little boy. I try to keep our routines all the same and keep things light and fun, but it gets stressful with him not listening and the fact that David's House doors don't lock from the inside so he can easily get out of the room while we are packing up.

We finally got all packed and headed for the car. We made the short drive to the hospital and got parked in the garage. We were getting out of the car when I realized that we didn't have Crayon. Levi had been lugging him as he wanted to bring him into the hospital. Crum! We must have left him at David's house. We decided not to mention it to Levi, but to get inside and checked in and then Jay would head right back over to get him.

Another successful David's House trip. We will be back in three weeks!

July 14 - Blood Work

July 14 - Blood Work

Today is a little different. We are on our way to VACATION!!!! :) Thomas Land, Sesame Place, Crayola Factory, and Maritime Aquarium here we come. But first we have to get the blood work out of the way. The plan is to leave the house at 7:00am and we pulled out of the drive way at 6:58!! Me, Levi, Jay, and Grampa were all on our way. The morning went well. A little hectic, but well. Levi woke up early which added to the hecticness, but all in all it went great. Since we were starting a Long drive Levi got to watch a movie and *shocker* he picked Sheriff Callie (our favorite car movie!) So it was a quiet drive to the lab.

We got to the lab and Levi showed Grampa and Daddy the fountain. Then we were off to see P. There was no line ahead of us, but she wasn't ready either, so we set down to wait for a few moments.

It wasn't long before it was time to head in. Levi picked out his band-aid and climbed up in the chair. The stick went well as always! Grampa and Daddy were there to watch and see that everything went well. He was off to the treasure box before you could blink an eye. He picked a pad of paper and a pencil! Then we were off to the fountain and out to the car. Levi knew that he got to go to Dunkin Donuts today so he was very excited. He played with the echo the whole way to the car and continued in the car, but all in all the morning went well.

It's nice to have other people along for the ride to blood work, but it adds some stress too as Levi and I have some routines that we do that no one else really knows. In the end things went well, but there were several moments of "Don't mess with the routine" and "He's good!"

We headed to Thomas Land! (Hence the Thomas outfit). When we stopped for lunch in the park I called for numbers but they weren't in yet. As we were leaving the park in the afternoon I called again and the numbers had come in. His count was down to 225. Not a bad number with an infusion coming up. But a definite drop from Monday (as expected).

Plan: VACATION!!! :) Ending with David's House and an Infusion  on 7/19.

July 11 - Blood Work

July 11 - Blood Work

This morning's blood work went off without a hitch. The morning went well at the house, no breakfast spilled on the floor, so that's a plus :) Levi was great in the car and all ran smoothly.

We got to the lab and there was a line ahead of us. We settled in for some waiting with a magazine.

But that quickly became boring so we moved on to selfies. He was being a little ham this morning for the camera.

Finally it was Levi's turn. We headed into the lab and picked out our band-aid. He picked out a dog from "Secret Life of pets". He thought the dog looked funny. The draw went super quick and easy as always. Levi was off and running to the treasure box while I was talking to P. He has been making great choices from the treasure box lately and I haven't had to steer him  in a different direction so I wasn't watching super close. I turned around and he had picked out a green whistle. Not a fake little kids music instrument whistle, a REAL whistle! Apparently the treasure box has new things in it. Who in their right mind thought giving kids Whistles was a good idea.

The treasure box HATES me!!

Levi was so excited and he had already put it in his mouth so it's not like I could get him to change his mind. At first he didn't know how to make it blow so I was thinking I was safe. We headed out to the fountain after high fives and hugs.

Off and running with his whistle! 

He asked for a donut but I said no and he was ok with that. We headed to the car. Everything was going well until about half way to the car when he accidentally made the whistle whistle. He was shocked and then excited! So for the next 28 minute drive to daycare all I heard was *WHISTLE* and then "Mommy, Mommy I did it!!" *WHISTLE* "YAY!! that's funny!" *WHISTLE* "I did it!" About half way through the drive I was seriously wishing I had gotten him the donut!!!! Drop off at daycare went well and the ride to work was WAY quieter!

I started calling the house around noon for numbers. By 4:00 there was still no message. Jay called again and there was a different receptionist covering. She was SUPER nice! She said that she would have K call us asap. K's form of ASAP is 5:15, but at least we got the count. His count today is 254.

Plan: Blood work again on Thursday 7/14.

July 7 - Blood Work

July 7 - Blood Work

This morning's blood work went Amazing!! The morning not so great. Levi was up early and I was rushing around to get everything done. Jay made his breakfast, which I then dumped all over the floor of my car. It was just one of those morning!

P was back and Levi was super excited by that. There was no line no waiting, so that was nice! Went right in and Levi picked out a minion band-aid. We climbed up in the chair and waited for P. The stick went super easy as always and Levi was off and running to the treasure box. He picked out a green squirter. I tried to get him to pick blue since we already have the green one, but he wanted the green one. He went over to give P her high five and hug, and gave her such a big hug he knocked her onto the floor! They were both in giggles. Then Levi took off for the fountain. He wanted his squirter opened, and then attempted to fill it in the fountain. Thank goodness for little arms, or I would have been wet wet wet!

I didn't know he knew how to take the red stoppers out of the squirters, but apparently he has watched me do it enough in the bath tub to figure it out!!

Then we were off to the car. He asked for a donut, but was ok when I said no. We were singing in the car on the way to daycare. When we got to the big brown bridge Levi started to peel off his band-aid (the spot on the drive when he knows he can take it off if he wants). Then he said "Sorry minion, Sorry I'm peeling you, don't cry Minion, It's ok!" then he told me "Mommy Minion Sad, this Minion crying" and when I asked why the Minion was sad he said "I'm peeling him" like duh, why didn't you know that Mommy!

We got almost to daycare and Levi said he had to go potty. So I drove a little faster on the dirt road, and when we got to daycare we headed right for the potty and we were still dry! But he had a lot of pee to come out. I gave him a hug afterwards and was out the door on the way to work.

These mornings are exhausting!! An hour and a half in the car, an hour with Levi and then 28 minutes back to work by myself. So tired by the time I finally make it to my desk!

I started calling the house for Levi's numbers around noon as usual. No message. By 4:00 with still no message I was annoyed and knew that I would not be nice to K. So Jay gave them a call. He got receptionist S who said that they hadn't gotten the results. Umm... what?!?! It's a stat lab that was done at 8:20 in the morning. Jay called the lab and talked to a tech who said "yes we have for sure sent that, but we will send it again" they were not able to give him results over the phone only resent the results to the doctor. I figured we would hear soon. But no. We didn't hear until 12:30 on Friday!! That is just not acceptable!! Thankfully his counts were good. Count = 275!!

Plan: Blood Work again on Monday (7/11).

June 30 - Blood Work

June 30 - Blood Work

This morning started like most mornings. Levi was up and ready fairly early. Nice Nurse had told us that she would be on vacation this week so we were trying to prepare Levi that he had to have blood work this morning, but that we would not be seeing Nice Nurse. I think he partially got it.

We got to the lab and there was someone in front of us. The lady's son was in getting his blood done and she was very talkative with Levi. He talked back some, telling her how old he was at that he had just had a birthday party. It was very cute. He did a pretty good job sitting in his chair and waiting for his turn.

Finally it was Levi's turn. He was a little confused why P didn't tell him he could come in. The Nurse called his name and I told her that he had a standing order and what his name was. She seemed a little surprised but found his paperwork. She asked if she would need an extra set of hands, I told her no, Levi was very well behaved. Levi was itching to go pick out his band-aid and she finally said he could come in. I think he was a little taken back that he just walked in and over to the cupboard (well more like runs in). He picked out a princess band-aid and we were sitting in the chair and waiting for her.

She came over and started prepping everything. One of the tube colors was different then normal and I mentioned it to her (it was orange instead of green), she said it was fine. I didn't argue with her as that is the tube for the second test, the only number I have to have is the one from the purple tube. She got him all set up. She wiped his arm with the alcohol wipe and then dried it with the cotton ball, but she didn't play with him the way P does. He gave her a weird look and said "softy soft!" as much as to say, you don't know what you are doing crazy lady. She put the needle in and only had to wiggle it a little before getting his vein. She went a different angle then P usually does, and I am assuming a different vein. Levi did NOT like it. and he made that known to us and anyone waiting in the waiting room. I haven't heard him cry/scream like that from a stick since we were in the hospital in January! The nurse gave me a look like "umm, i think we should have had another person", I gave her a look back and quietly talked to Levi to get him to calm down explaining how sometimes it will feel different then other times. I got him to calm down and even smile a little. When she snapped the needle in his arm, he gave her another look and an "OUCH!" and then got his band-aid and was off to the treasure box like normal. She got the information she needed from me and then said "oh he knows where the treasure box is" with this kinda attitude voice like he was doing something he shouldn't. I looked at her and said, "we are here lots!" Levi ran out of the lab without even a backwards glance. He wanted away from that nurse. She looked at me and said "he left" again with this attitude like I don't know where my kid is and I don't have him under control, I said "I know, he's going to the fountain, We have a routine!"

We are very ready for P to be back!!!

Levi's numbers came in around 3:45. I was just getting ready to call and request them when they finally came in. His count was 194. So not a huge rise, but a rise none the less. So we will take it.

Plan: Blood work on Thursday 7/7.

June 28 - Infusion #11

June 28 - Infusion #11

We got to our infusion a little early as per usual. We got checked in and headed out back. Levi was insistent that he lug his own lunch box, which resulted in Grammie lugging Levi as he was just dragging the lunch box along the floor. We walked out back and Levi suddenly got shy. He did tell Nurse K and Nurse T who was holding him ("My Grammie!!") but other then that he wouldn't even say hi. They assigned us to the Jungle room and we went in to put our stuff down. Nurse A was ready for vitals right away, so off came his shoes and we headed into the vital room. Levi did great with that! He stood on the scale with his hands on his shirt! He gave us all a good laugh when he was getting his height taken. He stood good on the floor and up straight like he was supposed to. Then Nurse A said lets see how tall you've grown, as she slid the bar down onto his head, and he slowly went up on his toes and pushed the bar higher! We all chuckled. Then it was on to the fun of blood pressure, temp, and O2 (the ones we do over and over and over during the appointment). But Levi did great!! We got his blood pressure and O2 on the first try!! And his temp on the second! :)

Then he was off and running to the playroom! He showed Grammie where everything was. And ran around like a crazy man. He bounced from the BBQ, to the car, to the stroller, to the shopping cart, to the cash register, to the baby doll, to the medical supplies, to the kitchen, and back to the shopping cart. It was exhausting just watching him!! After a few minutes Nurse K came in and was ready to access Levi's port, so back we went to the Jungle.

Wall of texts are boring, so adding a cute picture from a few days ago just because! 

The port access went great as always. He was a little squirmy when we have to hold his head, but otherwise he did great. Nurse K let him help her push the syringe of Saline into the port and that always makes him happy. She went to push in the second one without asking him to help her and he looked right at her and said "Can I help please" it was very sweet.

Once the stickers were on and the blood was drawn and the tube was attached to his shirt, he jumped down out of my lap. He was about ready to head back to the play room when in came Dr. V and another doctor. Turns out Dr. V has a resident on rotation with him right now. Dr. Sam came in to do a check on Levi and Dr. V went out so that Dr. Sam could get practice. He asked us a few questions. It was clear he had been taught what USS was only recently as he has some interesting questions, but for the most part it went quite well. He had very good bedside manor with a toddler! He did a very thorough check up on Levi, much more then we usually do. Levi was pretty cooperative, though he did keep looking at Dr. Sam and saying "All done now!" The only thing he wouldn't do is open his mouth, but that's pretty common. Levi doesn't like anyone all up in his mouth, thats for food, and toys only, no people looking in there.

Nurse K came in and hooked up Levi's Benadryl while Dr. Sam and Dr. V were talking in the office. Then in came Dr. V to talk with us and check out Levi. Today we found out that Levi is even more of a rare case then expected. Switzerland has finished running the DNA of Jay and I. One of us has the expected mutation that causes USS (the one that stops any ADAMTS13 from being created). The other however has a mutation that has never before been linked to USS. It makes since biologically, but has never been seen in a USS case. The mutation causes the ADAMTS13 protein to change shape, instead of being circular like it is supposed to it is elongated, and would therefore not work if he had any. So genetically Levi is the only case ever reported to have the mutations that he has. I said "so it's just bad luck?!" and Dr. V said you could say that, however in the medical world we call it a "unique circumstance!" So yes, just bad luck! :(

After a slight mixup Levi's benadryl finished and it was time to start the infusion. We started watching Planes (yes he once again insisted! Thank you Nurse A for finding it this time) and Levi started eating! This was too be the theme of the day, Levi eating!! I lost count on everything he ate today. It was at least 7 sippy cups of juice, a package of cookies, mandarin oranges, gold fish, chocolate teddy grahms, white teddy grahms, a granola bar, M&M's, and "fries" (veggie straws). I think I have forgotten a few things in there though. Nurse K and I joked about if she was sure that she had given him Benadryl and not a steroid today, because he literally didn't stop eating.

First snack!

The other theme of the day was potty! Levi went potty 6 times during the infusion. He did pretty good with pushing his pole to get there, but man did that kid pee a lot. He stayed mostly dry all day, and really peed every time he asked to go. When we changed his pull up to go home it might have had 2 pees in it! So proud of him (this is the first infusion where I haven't been peed on!)!!

Planes ended and he still wasn't falling asleep. He would get sorta quiet in my arms in the chair, and then he would get hyper. He was definitely trying to keep himself awake. So then we put on Finding Nemo. We had seen Finding Dory in the theater on Sunday, so it seemed fitting. Levi was getting more and more done at this point. He didn't want to sit still, didn't want to be held, didn't want much of anything, so we were trying to distract him any way we could.

Grammie and Levi playing Candy Crush.

His infusion was almost done. The bag was empty we just had to finish the line. Levi was done!! And decided to "swim" on the floor like Nemo!

Finally we were done done!! :) Nurse K came in to his room to de-access his port. He got a big bird band-aid which he was excited about, until it was actually time to put it on. The de-access went as well as ever. It goes great, except for having to take all the tape off!

It was then time to head out. He said good-bye and we were out the door. Levi lugged his lunch box and we headed out. He was a little wobbly on his feet still from the benadryl, and being quite tired at this point, but we made it to the car!

We will be back in three weeks!!!

June 27-28 David's House

June 27-28 David's House

I got out of work and headed home to pick up my Mom as she would be joining Levi and I at his infusion. I gave Jay big hugs good bye and we were off to pick up Levi from daycare. Levi was so excited to see Grammie!! I think he had forgotten that she was coming with us. We got in the car and started the drive. Levi requested Sheriff Callie and I started it for him. We stopped at McDonald's for dinner. We happened to run into Roz on her way home so that was neat!

The rest of the drive was fairly uneventful and we got to David's House a little after 7:00. Levi wanted to go right out and play, but I reminded him that we needed to check in and get our room. I wasn't sure what room we would get as David's House was completely full again. When they had called in the morning to tell us that we had a room I mentioned that it would be me and Mom not me and Jay, and they seemed a little flustered, they asked if Mom and I could share a bed, and I said yes of course. But when we got our room assignments it was single beds. We were assigned to the Pig room. Our first time in that room. Levi really liked the pig and put him in his bed immediately.

As soon as we were settled into the room Levi wanted to go outside and play. so out we went. Levi went down the slide all by himself and landed in a nice puddle at the bottom of it. oops. Mom fail, for not checking that there was a huge puddle. After that he avoided the slide for a few minutes and played with the tricycles, the house, the swings, the wagon, and dug in the dirt with the big digger.

Climbing through the swing set.

Digging with Grammie!

Then Bradley came out. Was so awesome to see him! We hand't seen them in 4 months, and his surgery went great! So seeing them again was awesome. And the boys clicked again right away, and started running around like crazy outside. They were up and down the climbing structure and sliding and giggling and playing "got ya" and it was just awesome to see!

Then it was time for a little quieter play inside. Before heading upstairs for bed. We put on Levi's Super Marshall pj's and he was pretty excited. He said good night to Grammie and I and climbed in his pack and play. Grammie and I headed outside to sit on the floor and wait until he fell asleep. He had taken a short nap at daycare so we didn't think it would be very long and it wasn't. Then we headed downstairs for a drink, a cookie, and some conversation. We talked to Bradley's mom for awhile and just hung out. Then it was off to bed.

We got back upstairs to the room and it was freezing in there! It had been quite sweltering when we put Levi to bed only an hour before. And that was to be the theme of the night. The room went from sweltering to freezing, to comfy to sweltering to freezing. It was a rough night of sleep for all. At 3am Levi did his standard scream/cry (I have no idea what is up with 3am!!). I jumped out of bed to make sure he was ok (without looking at the clock first) and that was my downfall. He was fully awake at that point. By 3:20 we had gone potty and then he was in my bed. We got a few more very interrupted hours of sleep, with Levi doing a complete 180 at one point and sleeping with his head by my feet! Finally at 6:30 he was up for the day!

He played in our room for a little while. Then it was time to head down to breakfast. This was the first time we had ever been to David's house when they were very lacking in food. There was no bread, no fruit, no nothing. It was very strange. I gave Levi some oatmeal and a granola bar and he seemed happy, but ate very little.

After that it was back up to the room to pack and head out. Grammie got her first taste of the day to come when we had to put Levi's cream on his port. It doesn't hurt, but he fights it a ton. He really doesn't like to be held for anything against his will. He wants to be held and cuddled when he wants to be.

We checked out, put in our request for three weeks from now, and headed to the car.

Thanks again as always David's House. Our Home Away from Home! :)

June 23 - Blood Work

June 23 - Blood Work

Today is our first drive longer then 8 minutes in the car in big boy undies. I was a little nervous on how it would go. But it went amazingly well!!

Blood Work went fairly well today. There was no line no waiting at the lab so we were right in and out. Levi picked out a Dory band-aid and climbed up into the chair. He was all excited to open the band-aid all by himself! Nice Nurse did her normal job of getting the blood on the first try so that was nice! :) Right before she put the needle in his arm he looked at me and said "I have to go potty"! I told him as soon as we were done we would go. She got it super quick so that was a huge help. As soon as the band-aid was on we were off to the bathroom. We went to the one right in the lab. We got in there and he peed right away. After the initial need was done he looked up and saw all the lab cups and he goes "pee in cup! pee in cup please!". It was very cute. I got him to finish in the potty and he was so proud of himself. His big boy undies were still dry! :)

We got out of the bathroom and was off to pick out a prize from the treasure box. He was a little nervous at first as there was a lady waiting in the chair to be drawn, but once he got by her he was off to the box. He picked out an orange squirter. I convinced him to switch to the pink one since we already have the orange one (and the green one, and the yellow one) at home. He wanted it opened immediately and I said sure. He lugged it out proudly. He gave Nurse P a huge hug on the way out! She was in her office doing the next lady's paper work. The lady was all smiles and told Levi he was cute. I always worry about those people who are just going to be annoyed that he is taking a few extra seconds with the nurse, but it was nice that this lady wasn't one. As we were leaving P told me that she will be on vacation next week! And wished us good luck.

We got in the car and headed to Dunkin Donuts. It has been awhile since we brought donuts and coffee to his friends and teachers and it's been a stressful daycare week with the potty training and wearing big boy undies. So we were off. On the way there Levi got bored and decided to shred all of his apples into his lap. It made quite the mess!

Shredded Apples!

We got munchkins for his friends and coffee for his teachers. Levi asked for a chocolate donut and I caved and got him one. He did really well with it. Usually he just licks the frosting and sprinkles off, but he actually mostly ate this one (after licking off all the frosting!)

It may look like a lot is still there, but this is more donut then Levi has ever finished!

Drop off at daycare went well! His teachers were both over the moon excited to get some coffee and his friends were excited to get munchkins for snack! They were playing outside, so Levi was off and running with them with barely a backwards glance for me.

Levi's count came in around 1:30. Count is 214 today! Its a definite drop, but nothing to be overly concerned about with an infusion coming up next week.

Plan: Infusion on Tuesday 6/28.